Category Archives: Reflection

Joining the Amputee Coalition

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Published on socials 8/6/22:

I am excited to announce that today I joined the Amputee Coalition team as the new Chief Programs Officer. I cannot imagine an endeavor more aligned with my passions and skillset than this role, at this organization, in service to the limb loss and limb difference community.

My father, a semi-retired prosthetist of 43 years, exposed me to this community at birth. I’ve never known a world without knowing individuals living with limb loss and limb difference. Through my personal and professional experiences I have come to understand many of the challenges facing the limb loss and limb difference community. But perhaps more importantly, I am eager to learn all that I do NOT know in the pursuit of service to this organization and the community it represents.

I have been volunteering with the Amputee Coalition and my local support group for the past 15 years. I attended my first Amputee Coalition conference in Atlanta in 2008 with a group from North Carolina and one of my best friends and former member of the community, David Ostiguy It was at that conference that he discovered a new connection with his community and a new opportunity to shine his incredible light. David has since passed away, having lost his battle to osteosarcoma, the culprit and cause of his multiple amputations over a seven-year cancer journey.

Starting way back with my undergraduate documentary work on body image, experience after experience brought me back to this community. When I started becoming more involved in the management of my family’s prosthetics practice, I had the opportunity to reimagine what a more patient-centric approach to our business could look like and went on to focus my master’s thesis work on the development of what the Amputee Coalition later adopted as its platform for state-level coverage initiatives, InsuranceFairness.org.

It’s been the fulfillment and joy that I have felt through my work over the past six years in service to the O&P business community at the American Orthotic and Prosthetic Association (AOPA), including oversight of advocacy, research, and strategic alliances, management of the Medical Advisory Board, and fervent dedication to lobbying members of Congress for better coverage policies, that have continuously reminded me that I am on the right path.

Now, I am excited to dedicate this next chapter of my career to the Amputee Coalition and the millions of individuals living with limb loss and limb difference that it serves.

Healing

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Warning: Possible TMI moment.

I feel comfortable sharing here. While it’s still a “public” space on the Internet, it is highly unlikely that you’ve reached this blog without looking for it. I don’t like posting too much personal info in social media spaces; it feels ego-driven and disingenuous every time I start to draft a post implying that the details of my experiences warrant the immediate awareness of others. Social media also makes things feel less real to me. That feeling is personal and I don’t knock anyone else who feels differently; it’s just my personal preference. This space is different for me.

I know very little about most things, and surely the things I know a lot about are a total snooze fest. Today, I feel like sharing my experience might help me better understand my situation and it might help others. I welcome thoughtful dialogue and suggestions, but not pity. I am not a poor thing; I am a strong woman who tackled a problem with the help of my favorite human, Joe Hall, my loving family and friends, and an amazing, badass named Dr. Amy Broach. So, here it is . . .

A week ago, I had surgery; left oopherectomy, bilateral salpingectomy, endometrial ablation and a progesterone implant inserted for hormone regulation. I am healing. I am at peace with my decision. There are so many women who have shared their experiences with these diseases/disorders and there’s something I’ve noticed underscoring all of them, a lack of information and understanding. 

Since 2015, so much has happened to/inside my body. The journey has made me painfully (literally) aware of the black hole that is the institutional understanding of female organ health. Fertility? They’ve got that bit carved out into its own lucrative bucket of “healthcare options,” but the fundamental understanding, the why, still seems elusive. I did not get an answer for why an otherwise healthy 30-something-year-old female would present with persistent complex-cell cyst growth and severe endometriosis. Hormone imbalance. Why? Nothing. I was offered a solution to help me get pregnant before I was offered treatment options to address the two disorders, because they don’t exist. Symptoms can be managed and the disease “kept at bay.” There is no cure other than removing the growths and the organs they grow on. Seems extreme. 

I get that my body is designed to create life, that’s pretty radin the grand scheme of things, but something went wonky along the way and I believe there should be treatment that doesn’t involve cutting entire organs out of our bodies that will ultimately lead to other health issues down the road. Throughout my experience, the question always came back to pregnancy; “Do you want to have babies?” Even if I had tried some of the more advanced and expensive options, my environment was not conducive to growing another life. It’s important to note that I could use “we” here in place of “I.” It would be factual, but Joe is not the kind of man to ever imply that he should have any control whatsoever over decisions about my health unless I am unconscious and he has to make them for me. His endless support has been invaluable. 

A year ago, I spent the night in the ER with an episode of ovarian torsion. It’s super painful and can present like appendicitis, at least it did for me. This incident helped Joe and I realize the need for immediacy in dealing with my condition. Endometriosis, by the way, can only be diagnosed by diagnostic laparoscopy or MRI, as I understand. The symptoms are well documented, however, so my doctor worked up my treatment options without a definitive diagnosis. We jumped into a treatment protocol, which involved forced menopause to keep the cysts on my ovary from growing and the endometriosis from spreading. 

The Mayo Clinic defines Endometriosis as an “often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.”

Winner, winner. The endometriosis has grown around my large intestine (colon) all the way down to my rectum. I can’t help but wonder, how rare is this really? The solution? Another surgery. The plan? Wait and see. The progesterone should keep it from growing/spreading, but we’ll have to see how bad the symptoms end up being. It feels like the world is saying your disease is “just a side effect of being a woman.” 

There are no answers. I found the following recommendation in a report published by NIH in 2017: 

“Two topics summarize the new recommendations: (1) a need for our field to thoughtfully and actively determine what data are needed to quantify endometriosis disease burden and to facilitate discovery that takes into account phenotypic variation and (2) endometriosis must be addressed and consistent data must be collected for research and clinical needs across the life course, in adolescence, pregnancy, and throughout adulthood. Adolescents in particular are an underserved group with high morbidity and social impact, and yet this age is likely the critical window for disease etiologic discovery and intervention.” 

My career involves a lot of boots-on-the-ground advocacy. As immersed in that world as I am, it’s often difficult for me to think about advocacy as it applies to my own circumstances. I’m good about advocating for myself in the moment, asking for exactly what I need. But I’m struggling to see the path for a movement on this issue, or I’m missing it. I’m frustrated by the lack of research being done, that the most basic questions remain unanswered. I’m saddened by the stories of my friends living in pain and the women unable to accommodate the growth of a fetus or bring a baby to term. 

Stumble, recover

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There are moments when I lose focus. This is less often than it used to be, as I’ve found strong purpose in almost all my present endeavors. This purpose works like a current beneath me, carrying me in a certain direction. And though I believe it is the right direction, it is not always easy to swim to the side. I’m not the best at resetting or stepping back as a form of self-preservation.

I stumbled last week. On stage, in front of a room full of colleagues I respect and admire, I stumbled. It was not the best seven minutes of my career. No matter the situational attributes of the moment, the fact is this, I lost focus because I ignored my purpose.

Here’s why. It was personal. In the moment, I made it about me, about what was happening to me, and not about the importance of delivering the message I was up there to deliver. I was on stage to educate the people in that room about a topic I know, a topic I talk about every single day.

Instead of looking at my colleagues and thinking about the importance of their assessment of the information I was providing, I focused on their assessment of me. I stumbled.

There were so many in that room who wanted me to succeed, and still, I could not catch my breath. A few of those people offered advice, teaching moments to influence the process of growth this will become. They are my champions, and are responsible for the current under me in more ways than they know.

Big picture, this is not that big of a deal, but it has allowed me to realign directly with that strong sense of purpose that has been guiding me so successfully. My dedication to our profession and the patients we serve is real and substantial. It is not a talking point or starting line, it is everything.

Flower and Fruit

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For most of my adult life, I’ve sought more than superficial acquaintance. That I may truly know a friend (woman or man), with all her vulnerability, is a gift; but it is a gift I seek with intention. Grant me the pleasure of knowing you with such depth, and I promise to protect it, to hold it dear to my heart. If you so desire, I will return the favor.

I am purposeful in my approach to relationships, as I need not bother another with the noise of my existence, and I care not indulge in less than all of someone. For some, this is exhausting; I am exhausting.

I recognize my tendency to collect those around me. I make space for love, in any moment. I feed on sentiment and praise, but only in the hope that I may return the favor in some near future.

In recent months, I’ve noticed that I find myself pondering my existence, my purpose, more often. Perhaps it is because I am not at capacity and need the wonderings and philosophizing to fill the void.

I am writing this post both as a reflection on recent experiences, and as a hope that I might further explore my own understanding of the appropriateness of my desire for the “flower and fruit.”

At the same time, I have noticed an unsettling trend in the judgement of good, or good enough. While the cloak of good ideas, thought alignment, and at times, vocal outcry, may serve well enough as good deed, (one that might mask the worst of our sins), I am not interested in the false equivalencies and unfounded narratives that underline much of our moral expectations. I am still shocked to see the level of hypocrisy that has become commonplace in our ideologies.

I’ve noticed a pattern in our social discourse, one of prescription and forced placement. While we are all screaming about standing up and fighting for fundamental changes, changes in the root and stem of our society, I also see a lashing out at individual thought.

We are caught in a wave of marketed truth, which feels shallow. There is often a lack of nuance and depth in our discourse. We forget that the problems are complicated, and the solutions, more so.

This is all to say that it is becoming harder to both offer and receive the fruit.

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“I want the flower and fruit of a man; that some fragrance be wafted over from him to me, and some ripeness flavor our intercourse. His goodness must not be a partial and transitory act, but a constant superfluity, which cost him nothing and of which he is unconscious.” -HDT

Landing Toy Planes

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Landing Toy Planes:

and other reflections on 2010

It’s nearly impossible to land a toy plane where you want to it land. The thing about toy planes (of the non-motorized fashion) is that you’re not actively guiding it in motion. The mechanics are left to a trial-and-error sort of experimentation. You basically throw it a certain way and hope that it flies a desired path placing it in the proper location for a successful landing.

 

I never realized how much I live my life this way. Launching off on some unknown journey, throwing it all out there, enjoying every second and hoping for the slight chance that I just might reach a desired outcome but with absolutely no expectations. Sometimes I nail it, it couldn’t be a smoother landing. Sometimes, those planes never land at all.

 

One of my favorite memories of 2010 involves a toy plane. It’s one that will stick around because it expresses a simple sentiment, a nostalgic reference point for the year. The little styrofoam plane serves as a reminder that the most amazing moments are never the ones we plan and that outcomes are never as important as the journey.

 

The year was filled with so many special moments, reference points along a figurative timeline; they bleed into each other consuming all space. I struggle to keep my breath as my mind scans over all these memories. I am overwhelmed with appreciation for all the amazing experiences shared with so many amazing people.

 

There is an undeniable presence in my life that should be noted early on in this post; whether obsession or escapism, my indulgence in live music provides the atmosphere for many of the most notable experiences throughout the years. It is the music that stays with me when everyone else is gone; it plays in my mind even when the volume is too low to hear aloud.

 

“The inexpressible depth of music, so easy to understand and yet so inexplicable, is due to the fact that it reproduces all the emotions of our innermost being, but entirely without reality and remote from its pain.” Oliver Sacks quoting Schopenhauer in Musicophelia.

 

I am blessed to have so many close friends who inspire me through their music. Sometimes I’m not quite sure how I got to be so lucky. In addition to my friends who are musically inclined, I am blessed with an abundance of inspired people of other capacities. No matter what the aesthetic, the desire and motivation to create is contagious; it’s what drives me. I am a better person because of the people in my life who make it “inexhaustible in its richness.”

 

2010 wasn’t my most wandering of years, but it was my most rambling. I am thankful for my friends who aren’t afraid to let me run, because I always run. I am thankful for my friends who encourage my creative spirit and unsettled nature. There are certainly very important people in my life who have supported me endlessly. I am sadden by my own inability to slow down sometimes and take care of the friendships that are my foundation, the brick and mortar of my being. It may seem as if I’ve become “too busy,” but busy is a choice and it is important that I make time for the people who mean the most to me.

 

There are so many people I need to acknowledge, to formally express my gratitude, but this note would go on and on for pages; however, a few cannot go without mention:

 

Jennifer Lundholm and Janessa Cyrus, beautiful girls, I love you so much. We’ve been together most of our lives and I am grateful for every moment. Thank you for understanding and accepting the craziness that is my life.

 

Ryan Butch and Dougy Starcke, still looking out for me, after all these years. 😉

 

Ivan Howard, my life is irrevocably changed because of our friendship. Thank you for believing in me as I believe in you.

 

Melina Reed, you are a gift. Though I’ve had you by my side for such a short time, the effects of our friendship have permeated through all aspects of my life. Your support and encouragement have been unwavering and your brilliance, inspiring. You, my friend, have held my soul and touched my heart. I love you.

 

Eric White, my angel, I have never been so proud of someone. You keep me in awe. Your heart is the purest I’ve ever known. Thank you for your love and support and always know you have mine.

 

I’d also like to thank Andrew Bopes for being a wonderful partner during our relationship, for always accepting my crazy schedule, embracing my less-than-normal approach to life and for sharing so many amazing experiences with me in 2010. I hope that life is always kind to you, that you always try even if you have to fail, and that love finds you as vulnerable as you ever were. Stay beautiful and be happy.

 

And finally, David Ostiguy, you are and will always be my hero.